Monthly Archives: October 2009

This morning began with a group of very nice visitors — the principal, special services coordinator and special ed teacher from Abbie’s potential school, along with another woman from the district, came to see Abbie and what she’s been up to lately. The Purple Board was front and center as they walked through the door.

Abbie was a little sleepy, but did do some math problems. I also showed them the book where Rae is carefully recording her progress. As I told them “She’s changed since the meeting on September 15th”, the depth of that understatement made me smile. They were very interested in all of her curriculum, and in her general needs. They are open to me going to class with her to train everyone, and help them get to know Abbie better — which is huge relief for me. Her class already has 5 kids with wheelchairs, so she will feel right at home. But, we will talk more next week about mainstreaming time with regular ed. classes. Her intelligence and ability to learn rapidly is making me think more and more that she belongs with regular kids, learning the same material, and expressing her knowledge in adapted ways. I also think being around kids who walk, talk, interact and learn quickly will be motivating and enjoyable for Abbie. We’ll see.. But, the bottom line for today’s visit is that I was really encouraged by how kind, open, and interested the staff members were.

After the visit, Abbie began working on her Cubbie verses. Which, for most of you requires a little backstory. “Cubbies” is the preschool section of a church program called Awana that all our boys did. As Cubbies, the twins wore bright blue vests, and earned patches for the vests by memorizing verses.

Shortly before she was injured, we were cleaning out the garage. Abbie found her brothers’ old vests, along with a “Cubbie Bear” backpack. She promptly donned both things and marched around the garage proclaiming that she would soon be a Cubbie. September wasn’t too far away, so I was excited to think about her being a Cubbie, too.

That September is long gone now, along with that sassy two-year-old. However, as she began blossoming lately I thought, “I bet she can memorize verses!” Cubby verses are short and simple, so I figured that would be a good starting place. I asked my friend Sandra, an Awana leader, if she could get a book for Abbie.

Well, Sandra mentioned this to one of my favorite ladies at church, who wishes to remain unnamed, but is the Cubbie’s leader. She said, “Oh – not only will I get a book for her, but also a Cubbie bear and the finger puppets that go along with the story. I was waiting for her that fall, and so looking forward to her being a Cubbie…”

I wept when Sandra told me that — even now, we are not the only recalling the loss.

Abbie was THRILLED when I showed her the Cubby bear, and kept the finger puppets on for hours. Then, the work began. I introduced about six verses, to catch up to session three, where the group is now at. I told Rae all about it this morning, and we devised a way to test Abbie’s memory. The deal is – if she memorizes the verse, she gets a sticker for her book, so she is VERY motivated.

I’d written the verse in entirety on an index card, and then each word separately on cards. We put the whole verse up and had her find the words in order. Then we took the verse card down, put some of the words up and had her fill in the blanks, which she easily did. Lastly, we took everything down, and Rae simply said, “I want to see if you’ve memorized it” without even detailing what “it” was.

Abbie correctly chose every word, in order, without missing once. She then picked out the Scripture reference from a choice of three. Here’s what she “said”

I almost titled this post “We Have a Witness!!” because as part of the news story, a very kind photographer visited our house. Dennis Oda, from the Honolulu Star Bulletin spent an hour with us, capturing Abbie doing many different things, most notably, multiplication.

We seated her in her chair, set up a complex problem, and let her go. When she picked the right answer, I held it in front of her face and asked if that was her choice. She gave me audible confirmation, which elicted a “Wow” from Dennis. Finally! Rae and I were so relieved to have a third party witness what she can do….if only it had been on video.

The day before I’d spent almost an hour on the phone with Christine Donnelly, whose talent became obvious to me when I read the article that she produced from that interview. I think she made me sound much more coherent than I felt I was in the interview.

I owe Christine, Dennis and the Star-Bulletin a huge “Mahalo” for bringing generous and positive attention to brain injury recovery.

My interview with Christine also presented me with a challenge of opportunity. For the past several months I’ve been working diligently at preparing a company for launch. I felt I was about a week out from a soft opening the day I talked with her. When she told me the piece would run on Friday, and would include the web address, I said, “Well, it will be open Friday!”

I hung up the phone and wondered what I’d done, and if I could pull it off. A little sleep deprivation and lot of typing later…it’s done! So, I would like to invite you to visit Matrisse, my wellness company built on everything that Miss Abbie, and many generous teachers have taught us through this journey.

Abbie and I have been keeping in our routine of reading Psalms in the morning. Sometimes, when I am certain no one is within earshot, I even sing them to her (making up my own off-tune melodies as I go). One that we read this week seemed penned just for her:

Psalm 20: 1,4-5

May the Lord answer you when you are in distress;may the name of the God of Jacob protect you.May He give you the desires of your heartand make all your plans succeed.We will shout for joy when you are victoriousand will lift up our banners in the name of our God.May the Lord grant all of your requests.

I see Him answering and protecting her daily. I know some of the desires of her heart, and can guess at a few plans, but I think there are many that remain just between her and God. In these recent days, however, I sense God pulling back the curtain just a bit, and revealing the giggling girl full of anticipation and excitement who has been waiting to burst forth.

My spirit shouts even now, while at the same time I hear “You ain’t seen nothin’ yet!”May God grant the mercy and grace for us to see her completely victorious.

Saturday morning found Abbie at one of her favorite places – the University of Hawaii. No, despite all her recent gains, she’s not going to college quite yet, but rather was reunited with her long-standing group of friends who also use devices to communicate.

Abbie was not able to participate in the Saturday morning clinics last year because of all her surgeries, so we are both excited to be part of it again. I really liked her student-therapist, and am looking forward to receiving help figuring out how to keep pushing, and opening doors for, Abbie.

In the parent conference at the end I was gleefully detailing Abbie’s recent academic progress, which led to a lengthy discussion about how we give her more choices from which to select answers. The short answer is — it’s difficult right now, and will be changing.

The longer answer is, we are going ahead with planning for the hand/arm surgery. The meeting we had on Thurs. was a parent’s dream. For all you special needs parents out there — can you imagine having every single therapist you work with AND the orthopedic surgeon in the same room? There’s a lot to figure out, as a team, to determine exactly what the procedure will look like, but at the end of it, she’ll be spending four weeks in casts.

I feel guilty for the fact that I can so easily dismiss the arm casts as a concern — but after two spica casts, they seem comparatively inconsequential. Not for Abbie, though. She did NOT look happy during the entire meeting. I keep reassuring her that she will not wake up with a huge leg cast on, and that it won’t be nearly as painful (I am hoping!!). I continue to explain all the things that will be easier — using communication devices,fingerpainting, drawing, having her nails painted…it doesn’t seem to make a dent in her well-earned resistance. This just boils down to one of those times when as a Mommy I have to choose what is best for her even if she disagrees.

After working hard at UH for three hours, Abbie then came home and did over two more hours of school work. She would not quit. We hadn’t planned on introducing multiplication for a week or so, but since she wanted more…we gave it to her.

After being with Abbie all morning, I was spending time with Ray and the boys while Rae played tutor. She introduced “groups of numbers”, as in “two groups of two”. Using this method she introduced the twos times table up through 6, which Abbie quickly picked up. For 7,8 and 9 she simply put up cards that said 2×7, etc. Abbie did not miss one.

At the end of their session, Rae beckoned me in to see the last problem Abbie had worked correctly:

I giggled like little girl getting a lollipop. But, Abbie wanted me to see for myself, so she insisted on one more.

We set up the following problem:

2 X 6 + [picture of five dots] – [picture of four dots] + 13 – 2

Rae and I had to signal each other behind Abbie’s back to make sure WE had done the problem right, so that we could include the correct answer in her selections.

It took a while, but Abbie eventually chose 24 (and, so you don’t have to do the problem…she was right.) I wanted to confirm it was her choice, so I got the 24 card from the board, and held it in front of her and asked, “Is this your choice?” With more than a hint of indignation, she used her voice to make sure I knew that’s the one she wanted…I had to laugh.

When I told Matt a few days ago that Abbie understood subtraction, and that we were planning to show her multiplication next week, he added “and the week after that…astrophysics.” Put another way, her speech therapist said, “I want to improve her communication access so that we can find her upper limit…because I am not seeing it yet.” I went looking for it today….I stepped outside, looked up at a clear, blue sky and said, “Yep, there it is.”

We have decided to keep a composition book to better track what Abbie does each day during “school.” Since she had been excelling with addition, we thought it was time to introduce subtraction.

Rae started out the same way, asking, “If you have three circles and I take away two circles, how many do you have left?” Abbie selected “1” as her answer, and thus concluded the entirety of instruction about subtraction.

With that simple little lesson, Abbie went on to correctly answer:

[picture of three circles]-[picture of two circles] – during this problem she was again asked “if you have three and I take away two, how many do you have?

5 – [picture of 3 circles]

9-5= [picture of 4 circles] — the only thing said to Abbie was “Find me the answer”

Then, we decided to challenge her, and mix it up a little bit.

9-5+3=710-2+[picture of three dots]=1110+12-[picture of four dots]=18 — on this one Abbie needed to hear what many children working mixed problems hear, “Pay careful attention to the signs”10-3+24=3112-3+4-10=3

Wowza!!

So, if that’s what she can do on Day One of subtraction…look out for multiplication and division coming right around the corner!

We’ll be having a meeting tomorrow with her orthopedic surgeon and all of her therapists to discuss a possible hand/arm surgery. Her thumbs just love to lay on her palm, which makes it hard for her to use a joystick, and other communication aids. Her arms rotate out, which again, make access to communication devices more difficult. Dr. B. can remedy both of these situations through surgery. We will be talking as a team tomorrow to determine the what/how/when of the procedures.Although I’m never thrilled about surgery, when I see how her quality of life and ability to do things has improved as a result of the major hip/leg surgery, I project those results onto her arms and hands and imagine what she’ll be able to do — especially with communication. Please pray for wisdom in this area.

Abbie was very excited to find out today that her faithful friend Cassidy will be welcoming home a little sister from China in December, after a 3.5 year wait! We can’t wait to meet her!!

And, I must send out hugs and prayers to my extended family in Illinois. My Auntie Lavonne passed away last night, leaving a husband, eight children and many grandchildren. I wish I could be there with you as you say “farewell” and celebrate the thought that her suffering is over and she is in the presence of God in a perfect body!

If you’ve read the recent purple board updates, you know we’ve been thrilled with Abbie’s academic progress lately. Over the years I have learned the lesson, though, of not taking what she is currently doing, or the speed at which she is progressing, and projecting that into the future. You have to celebrate the victories for what they are in the present, not as precursors of future gains. Most of this past week reminded us once again, that we are riding the Brain Injury Train, and let me tell you, it is certainly not an Express!

Abbie didn’t have a lot of interest in school work last Saturday and was giving random answers just to get through it (as many kids often do.) We thought perhaps she was distracted by excitement over that night’s plans to attend the symphony. You should have seen her….all dressed up and riding in the van late in the evening, she was all grins – knowing she looked beautiful AND was up past her bedtime. The symphony was a wonderful experience for her, since we do many of her exercise sessions to classical music. Abbie was so excited to hear real violins, cellos, flutes and horns! It was an especially appropriate performance for Abbie because one of the actors from Lost narrated The Story of Babar (delightfully, I might add), with musical accompaniment and enhancement. Although she konked out at intermission, Abbie had a memorable experience. Once again, it was made possible by the generosity of caring people! A woman that has never even met Abbie, but hears about her from Genevieve, purchased tickets for our entire family. Since the boys had plans, Genevieve’s family came with us. Amazing. At eight, having already been to the ballet and symphony, Abbie is becoming quite the cultured girl.

Her disinterest in school, and most everything else continued through the week, and she just seemed very far away. Those kind of days are difficult for me, and when they pile up I begin to wonder if the good days were just a mirage I dreamed up

I started focusing on some specific interventions on Thursday, and she had a pretty good day in PT and Speech on Friday. Even better, she was smiling all day long. And then today, I arrived home from a very long day today to find this note from her nurse, Rae. I love it when someone writes an update for me!! “Hi Tiffany-

Since we didn’t get much of a chance to talk today, just wanted to fill you in on how smart our Abbie really is. She is using her eyes, and working hard, as usual. When she has a good day, she really has a good day.

She was able to look at the purple board and do the following math problems by herself. I didn’t say anything to her about what the numbers were or anything, except asking her to find me the answer. She did 9+8=17, 9+8+10=27, 23+2+5=30. I can’t believe how far she has come!! I’m so so proud of her, and I can’t imagine what you must be feeling.

OK, so if you think that was amazing, she just did 23+12=35, with choices of 35, 31, and 50. Correct!! 23+27=50, with choices of 35, 31, and 50. Correct!! 23+27+12=62, with choices of 62, 30 and 75. Correct!! There is no stopping this girl. She is on her way to college! Unbelievable. And, all by herself without any help from me at all! I honestly did not say anything to her at all. I am speechless!!

Now I’m puzzled as to how she is figuring out the answers! She can’t be counting because those numbers are way too big. All I can say is WOW!! AMAZING!!

23+31+30+[picture of three dots]+26 = 113 CORRECT!

I wish you were here to see this because you probably think I am crazy — but she really is adding!

And the problem of the day:31+11+25+[picture of three dots]+24= 94, with choices of 110, 94, and 86. CORRECT!

I tried to call you to let you know how she was doing and to put a smile on your face…

Abbie is unbelievable and is going to continue to thrive if we push her!”

I was stunned when I looked at the purple board, and saw that last problem there. I have not one clue how she can accurately add up numbers in a problem that spreads over two rows of flashcards. When her brothers saw the problem they said, “Whoa…I would need a pencil and some time to get that right!” They were then silent for a moment, as the depth of Abbie’s intellect finally sunk in.

“Mom, I think she is brain child,” said RJ without a trace of irony in his voice. “I think maybe her brain injury worked backward. Instead of killing cells, it created a whole bunch of new ones.” His precious still-childlike logic made me smile.

Matt added a very observant, and I think, accurate, assessment. “I think that since she can’t move her body, she is able to focus her brain very, very well.”

The clickety-clack of the Brain Injury Train wheels always sings out the same song: “Who really know? Who really knows? Who really knows”

No one — not about why the frustrating, heartbreaking confusing things happen, and not about why the incredible, hopeful, confusing things happen.

We just have to keep on riding, taking the valleys with the hilltops, ever trusting the Conductor, and celebrating when His grace is shown in such amazing ways.

This has been a week when we’ve truly realized that having a special needs child is a full-time job. I feel like I’ve been pinging from meeting to appointment to meeting to phone call.

On Monday morning we were joined at our PT/OT session by the medical director of the managed care company that authorizes Abbie’s therapies, along with a care coordinator. I was very nervous about this visit, and the meeting that would follow therapy, because I worried that Abbie’s access to therapy would be cut off. After all, she is over five years out from her injury, and I didn’t know what kind of progress they would be looking for to justify continued therapy.

I was encouraged to find out that the medical director is a physiatrist, and had a long history of working with brain-injured patients. She was very observant, and gave Abbie time to respond to requests. Abbie did her part by having a very “on” day, thank goodness. She did well in the sit-to-stand practice, and then she activated the power chair when was she asked to do so. All the while, though, during her brilliant performance, I was dreading the post-therapy meeting.

It turned out that all the chatting we’d been doing during the therapy sufficed as the meeting. As the session drew to a close the Dr. turned to me and said, “So what I am thinking is one OT/PT session and one PT/Speech session per week, and then we’ll reevaluate in three months because she is changing so quickly.” I almost cried.

I told her how very grateful I was to not have her put the “fill in the blank” (e.g. “one year out, “two years out”) limit on Abbie’s recovery. She answered “Oh no..not with an injury this diffuse in a child, you just never know, you never can tell. Let’s just she what she does.”

We got home just in time to prepare for the next meeting, with the folks who authorize Abbie’s nursing hours. Back in July we were told that her hours would be cut from 30 to 2-4 per week. We were trying to prepare ourselves for this axe to drop on Monday afternoon. We were told that while cuts are on the way, they cannot be implemented until a new policy is written, which could be December or January. So, we have a reprieve for now. After two hours in that meeting, my head was spinning, but I was relieved to be through it.

Yesterday morning we received a call from our neighborhood school, who determined they could not care for Abbie, to tell us what school had been selected for her, Ali’iolani Elementary.

We’ve set up an appointment for their staff to meet Abbie, and are trying to set one for Ray and I to visit the school. We will also have to have more IEP meetings, especially since Abbie has now met many of the goals we set for her just last month.

Yesterday afternoon I took Abbie to see our fantastic orthopedic surgeon, Dr. B. We started out with Xrays of her spine, hips and femurs, which were fine. We discussed the timing of taking out the hardware in her hips and femurs. I was hoping it wasn’t a strict one-year timeline, because that would mean an OR trip next month. Nope – no time pressure on that front, we could wait up to a year.

But, there was discussion about the possibility of a completely surgery. Abbie’s thumbs are contracted are pretty glued to the palm of her hands. In addition, her forearms always roll to the outside. Dr. B. can do a procedure to release those stubborn thumbs, and can reroute tendons to rotate her arms to a normal position. I wouldn’t consider this surgery, save for the fact that there is now a huge upside. Abbie’s communication and expression has been exploding lately, and with open thumbs and properly-rotated arms, her ability to access communication devices (and the power chair) would be greatly increased.

I was thinking about pushing this procedure off quite a while when Dr. B. made a very compelling point, “Remember that her hand is her communication tool. So, think carefully about how far down this track of new communication devices and methods you want to let her progress before you knock her back with a surgery and then have to adapt to new positioning.” Hmmmmm, he is so right. We are going to schedule a meeting with him and all of Abbie’s therapists so we can decide what (and when) is best. Please pray for wisdom for us in this matter.

Abbie continues to change and progress in amazing ways. Today, as we did our morning “dancing” session, a new, very foreign thought came to my mind. As she shows us how quickly she learns, how ardent a learner she is, and as college for Abbie has crept into my mind, that lead to “what then?” Today, I imagined her life as an adult, and for the first time since the day she was injured I considered that Abbie may live apart from us as an adult. Perhaps not independently, but “on her own”. I didn’t know how to feel about that at first, as I’ve grown to assume she’ll be my forever daughter, always with me. I now suspect she has much bigger plans than that!